Supporting Someone with Huntington’s
Life can look very different for those living with Huntington’s disease, but everyone’s journey will be unique. As a loved one, your priority will likely be prioritising their emotional, physical, social and practical needs as they cope with their diagnosis.
Supporting someone with Huntington’s disease can be difficult. It can include learning as much as possible about the disease, keeping them active and doing things they love, helping them with daily activities, accompanying them to doctors appointments, listening and being patient, and making life as normal as possible for them.
For those who require additional care, considering options like group homes for disabled or seeking assistance from NDIS accommodation providers can provide a supportive environment tailored to their needs.
Whether you have just learned of a genetic link to Huntington’s of someone you love or you have been providing a patient with Huntington’s disease support for a long time, there are a lot of important factors to consider. The good news is, there are treatment options to manage the symptoms of Huntington’s, but the support and care from loved ones will make the difficulties of the illness that much easier to digest.
How Do You Get Tested for Huntington’s?
If you or a loved one have family members that have experienced Huntington’s disease in their lifetime then you can consult with your doctor. There is a genetic test using a blood sample, combined with a complete medical history and neurological and laboratory tests to determine if you carry the gene before symptoms occur.
Knowing you have the gene is not for everyone and some people choose not to know. However, some decide that having this knowledge can help them understand what the future holds and better prepare for the onset of symptoms.
What is Everyday Life Like for Someone with Huntington’s Disease?
Huntington’s disease is an incurable genetic condition usually portrayed by uncontrollable jerking movements called chorea along with cognitive, behavioural and emotional changes. Symptoms commonly onset during the person’s 30’s and 40’s and worsen over time.
Movement issues
Chorea occurs in people with Huntington’s usually in the hands, feet and face. These unpredictable movements affect a person’s ability to carry out daily activities such as eating, dressing, writing and driving. They can be managed with the help of certain medications alongside physical and occupational therapy.
Cognitive changes
People with Huntington’s may experience challenges with their cognitive ability such as remembering the content of conversations or things they have watched or read. Navigation can also become a challenge with the risk of getting lost in what might usually be familiar places. Huntington’s can affect a person’s ability to make decisions, plans and process complex topics.
However people with Huntington’s generally retain past memories and recognise familiar faces, objects, letters, numbers and colours.
Mood and behaviour changes
Agitation, irritability and aggression are some possible personality changes that may occur in people with Huntington’s. It’s also not uncommon for people to experience disinhibited behaviours such as speaking out of turn or inappropriate sexual overtures.
Other symptoms can also include hallucinations and delusions as well as feelings of anxiety, depression, apathy and frustration. All of which can severely affect day-to-day life. These symptoms can be treated with medications such as antipsychotics and antidepressants as well as counselling and psychotherapy.
How To Support Someone With Huntington’s
Watching a loved one take on the burden of a disease like Huntington’s can be frightening and you may feel the effects first hand. Your loved one will require extra emotional support to continue living a good quality of life.
Things you can do to emotionally support your loved one with their diagnosis include:
Stay well informed
Learn all you can about the disease, what the symptoms are and how to manage it. This will have a huge impact on helping you and your loved one deal with it. Do lots of research from reputable sources such as the International Huntington Association, or go to doctors appointments with your loved one and ask questions. By being well informed, you’ll be better equipped to manage the disease with them.
Helping them with their medical requirements
Scheduling medical, therapy and test appointments and accompanying them to these appointments can really help to show support for those with Huntington’s. You can also help them to review medical instructions, fill prescriptions and help them to take their medication.
Help with everyday tasks
Day-to-day activities such as cooking, cleaning, bathing, or shopping can be difficult for people with a neurologic disorder. The simple things that we take for granted can take a lot longer to achieve, and people living with the disease may be too proud or embarrassed to ask for help. You can help by offering to take off the burden of running to the store, cooking a meal, picking up medication, or doing chores.
Exercise
Being active is important for us all, but especially for those living with Huntington’s. Exercise is beneficial for reducing symptoms and maximising function by helping the brain produce dopamine, an essential neurochemical involved in movement. Ideally, 150 minutes a week of aerobic exercise is considered beneficial but their physical or occupational therapist will conduct a personal recommendation.
Listen to them
Let them talk about their emotions and let them know you’re listening. Living with a degenerative and unpredictable disease can induce anxiety and depression which are both common side effects of Huntington’s. This can be helped immensely by having the support of their loved ones around them.
Keep an eye out for new symptoms
Be aware of any changes or worsening of symptoms such as psychosis and diminished cognition. These symptoms will likely progress over time and may not be as noticeable to your loved one. Depression is also a common symptom and, without treatment, can lead to faster physical decline. Help them get the support they need from a doctor or therapist.
Be patient
The common symptoms of Huntington’s can be disconcerting. Make time and don’t rush them. Occupational and physical therapy can help with these symptoms, but if they get worse, encouraging them to use alternatives such as a walker or wheelchair and other forms of communication will help them to get around and communicate.
Stay as normal as possible
Talk about and continue to do things they love. You may need to think outside the box and make adjustments, but the more normal their life stays, the healthier they will be. Try to keep their spirits high by not focusing on the disease.
Caring for Someone with Huntington’s Disease
Caring for a loved one with Huntington’s can take its toll on you which is why it’s imperative not to disregard your own needs as well. The stage of your loved ones condition will determine the level of care they might need from you and as the disease progresses they are likely to require additional support.
At the beginning of a diagnosis they will likely be able to continue taking charge of their own care with minimal assistance but eventually they will need you to take the lead. When it comes to caring for someone with Huntington’s disease there are a number of practical considerations to keep in mind such as home safety, self care and living arrangements.
Home safety
The physical effects of Huntington’s such as chorea (sudden or jerky movements) can make it difficult to maintain physical control of their own body. In addition to chorea, the cognitive symptoms of the disease can impair reasoning which can lead to accidental injuries.
There are things you can do to minimise the risk to your loved one with Huntington’s disease such as reorganising their home and ensuring their bed is not too high or transferring it to a downstairs room to avoid accidents such as bumping into furniture, falling out of bed or even down stairs.
Self-care
If your loved one is still independent but starting to struggle with their cognitive ability you can work together to create a checklist of daily self-care activities such as brushing teeth and hair, eating healthily and drinking fluids, using the toilet and maintaining hygiene.
Supporting a loved one through Huntington’s Disease can be frightening, confusing, and isolating. Our specialists at Maple Community Services have a lot of experience and are ready to help in whatever capacity you need us. Get in touch with us and take the first step in finding productive solutions together.